Welcome to My Kidney Transplant Blog

If your NEW please take a minute and read the About Me / This Blog Page to the Right ( I updated it Sun. Aug 9th ).

This is My / Our record of dealing with my Kidney Transplant.  Its for anyone interested in my process ( friends / family ) or anyone searching the web.

Important Dates :

June 27 / 09  Started this Blog,

July 27/ 09, Transplant date.     click the dates on the calender .

The Rules :

1) I tell it as I see it / Experience it, be it right or wrong, correct /or in error (not intentional), It’s from My Perspective..

2)  At times it will be rather Graphic / Crude,  Off Balance and I Guarantee You will find Spelling / Grammar Errors.

3) Just because it’s been my experience does not mean it would be yours.  If your going through this Don’t Get Freaked by anything here.  Ask Questions of your Doc’s and Read !.   I was not expecting  some of the things I experienced and a little heads up would have been nice. BUT, I now see I didn’t do enough research or asking,  so I take responsibility for that.

Here’s the basic plan for this Blog,  (most recent posts @ top):

1) Pre-Transplant Prep ( July 2009 ),

2) The Transplant Itself  , July 27 / 09  and Hospital  Recovery

3) The Recovery Months, post Hospital,

4)The Meds ( separate page @ right)

My Original Blog about Me / Us  dealing with Failing Kidneys is still here :

http://mydamnkidneys.wordpress.com/

5 Hrs before Surgery,  Ignorance is BLISS ! !

I CAN’T CHANGE THE WIND,  BUT I CAN CONTROL MY SAILS ! !

Oh, The Dog at the top is My Wife and Sons Dog, He did that to himself and would probably have died if not rescued. What a Rahtard.

Please Visit the Organ Donor Registry, Sign Up and Discuss your Wishes with Your Family.

( Scroll Down for the Daily  BLOG Posts )

Legislation Requires a Person to Sign up to be an Organ Donor should you Pass On.     FACTs :

A )  25 % of People on the BC Transplant Waiting List WILL DIE Waiting !

B)   Kidney wait lists are 5 – 8  years or more, on  Dialysis,  which does not give a healthly quality of life, untreated = Death.

C)  Every Effort will be made to Save Your Life Even if You are a Registered Organ Donor.

British Columbia: Go to www.transplant.bc.ca .

Rest of Canada go to :

http://www.transplant.ca/pubinfo_becomedonor.htm,

click the province you live in for info on the Organ Donor Registy.

United States Residents :

USA  > http://organdonor.gov/donor/index.htm

Most Importantly, Discuss your wishes with your Family so there is no confusion or doubt if the unfortunate happens.  It’s a talk that could save numerous lives, making a lasting Legacy.

And Now a Quote  from a Reputable Source  re: Signing Your Organ Donor Card !!

 

Pope John Paul II

 

Mid Month Bloodwork, Disappointing !

I see the Doc next week.  Went for Bloodwork on Wed. Results

Creatinie, 208,  ( or 2.36 )  ( , previous were 192, 193 , 212 before that, 174 before that )

Hemoglobin   111,  previous have been about the same.

I’m also a little concerned lately when I feel a bit tired during the day ( which was standard for my life pre transplant ) even though I’m sure it’s just that I don’t sleep well most night.  Just paranoid as I feel Good regardless.

I / We are VERY much looking forward to the scheduled Dr. appt next Wed.  I hope we can get some answers, but I’m thinking they’re kinda in the dark as well.   I will even sugest a biopsy if needed as I’d really like to know Whats UP !

I have also been thinking I should be more diligent regarding a real Kidney friendly diet, similar to what I was on during end stage failure.  If My New Kidney is challenged at 4 months, I best be as easy as possible on it to squeeze maximum  years outta the bad boy.

Just a little venty this time,  but thats whats in my head.

AL

3 1/2 months & H1N1

Today I went for my H1N1 and Seasonal Flu shots.  The wait wasn’t to bad,  about 1.5 hrs from entering the line before the clinic opened until I was out the exit  including 10 min. hanging around after the shots.   I’m definitely more actively avoiding germs, hand washing and gargling a couple times a day. My family has also stepped up the germ warfare by washing /  sanitizing when the come home.  The Flu sux at the best of times, let alone with a new “somewhat struggling ” new kidney in a heavily Imuno Supressed body.

Last Labs were 4 days ago,  basically unchanged.

Creatinine @ 193     Hemoglobin  111,    wt  about 200 lb (198 on my home scale)

I’m feeling good with lots of energy, even though I’m sleeping crappy. I also breath a lot louder / flabbier when I sleep (according to my wife ) since the weight gain post transplant.  Most nights I sleep in the guest room as I’m not tired when my wife goes to bed and then I snore/ish and wreck her sleep.  Also unless I take a couple Gravol as sleeping pills (they wont refill my Heavy duty sleeping pills ) I sleep really light and  get up 3 – 6 x a night.  Despite this I’m up at 7 am and ready to go until 11 pm most days.  It’s a huge difference from Pre Transplant days.

I’m still hovering around 200 lb despite what I eat.   I’ve also started working out with decent intensity this week (easing into it). Abs/ Crunchs . . . the first few, especially extended leg raises, have to be done SLOWLY as  there is definitely some pulling of scar tissue internally until I get things limbered up. After that it’s Go Time with no Issues.

I’m running on the treadmill now and it’s coming back fairly quick. I would prefer to be running outside but I can’t run unless I’m close to a toilet. I have to stop 1 – 2 times during the run for Bowel reasons.

Monday’s run I barely made it to the 1 mile mark even with lots of walking breaks.   By Thursday I did 400 meters non stop and the rest of the 1.4 miles with only 30 second fast walk recovery’s.  Friday I took off as I don’t want to overdo it.   I’m planning on playing a game of Racketball with my Son this weekend.  I am still undefeated against him, but he’s been taking lessons and is really improving. He was close to beating me when we played 4 months ago so we’ll see what happens.   I think I’ll have to dig real deep to pull out a “W”.

The Drugs !

Gotta bring get some things addressed when I see the Doc on the 27th.

- I get the shakes a lot lately, possibly more than a month ago. Tacro  is likely the cause the nurse said. I’m wondering when that should subside. I will definitely have to adjust my work style a bit when it comes to doing fine work or “Hot” Electrical troubleshooting.

- Bowels, they’re messed up.  Mostly because of the CellCept I believe.  It’s not a big problem, but inconveinent at times. It’s not to ba / manageable 80 % of the time and the other 20%  is just not cool. It’s  controllable if  I “hurry”.  If this is the way it is forever I’ll take it over tanked Kidneys any time.  I can always drop an Imodium if it’s a bad day and I can’t be close to facilities.  ( but I’m trying to limit “extra” drugs on my chemical soup body” . I am looking forward to getting the Guts sorted out.  Especially If I’m going get back in to running. I have a 10km feeling coming on, feels like a spring 10k.

3 Months Ago !!

Its 3 months since the transplant. It almost doesnt seem real.   

My most recent Clinic was last week.  here’s the Numbers.  I’m now down to Bloodwork every 2 weeks and Clinic’s 1 x / Month.

Weight,  Still 200 lbs,  some Predisone Face going on.  I’m aiming for 190 end of November.

Creatinie, 192  ( 193 previous, 212 before that, 178 before that ).

Hemoglobin stable at 112,  looking for above 130, that should be coming soon.

Blood pressure is a little high at 14o ish / 90 – 96, but I do hit mid 80’s at times.  I have a home blood psi tester and am tracking it at various times to get a good average.  Don’t need higher doses of BP Meds.

The Clinic Nurse said “It’s not all about the Creatinine” as My New Kidney is doing everything else that its supposed to,  Regulating Fluid level in my body, Maintaining Potasium etc at the Normal Levels .  Some people  end up with a higher Creatinie level and do great, so No Worries !!!!

Recovery is going well.  Meds (cellcept) are giving me some GI issues ( mostly Soft acidy ”Stools” at times).  I’m  at 1000 mg,  2x per day. If  GI doesnt settle down they’ll try me on Coated Cellcept, kinda Time Releases, but don’t want to change med’s up much as they’re still watching the Creatinine.  It’s manageable most days. 

 Tacrolomis  ”Shakes” are still there. I’m taking 3.5mg  2x/day.  It’s especially funky when I try to do fine work. This may be an issue when I get back to work as I’m an Electrician who needs to meter live equipment, up to 600 Volts.  Shakes arent an option.

I “Pulled” my incision internally a few days ago, Just Weird !!.  Middle of the night I couldn’t sleep and did a full body stretch while laying in bed, from my toe’s to my arms. Well at Full Stretch I felt a Knife Stab right at my Incision, but inside.  1st time ( since about week 2 ) that I felt that.  It was a bit sensitive for a couple days after that.

Now that I’m past the 3 month recovery window I’m starting to get in Shape. Starting Crunches and Cardio. Tried Mountain Biking up a trail by our house, man am I outta shape, but that’s to be expected.   I still have to watch it, but it feels good to be working out again.

Next update in a couple weeks.

Kelowna Post transplant Clinic Oct. 07

1st Clinic in Kelwona today.   Met some new Staff,  Seems like a good bunch.

I’ve Been feeling really Energetic lately,  up from 730 am – 11pm,  no sleeping in the afternoon and busy around the house / yard.

Weight  89.5 kg   (last week 91 kg / 200.7lb ), 

Blood Pressure  132/105,  High.  Bought a BP Monitor to take readings at Various times of the day over the next few weeks to see whats really going on.

Creatinine, Questionable  211 , major Jump Maybe ?   ( last week 178 )  NOTE :  the bloodwork was done at a different lab than all my other bloodwork.  It is very possible the  same blood sample would give differnet results, I recall St. Pauls saying that this difference could happen.  SO,  No Need to get Excited.  I’ll have bloodwork done tomorrow and again on Tuesday.

Creatinine could also change with Dehydration,  but I think I’ve been drinking well,  regardless I’ll be upping the fluids.

Hemoglobin 113  (last week 108 ) 

My Cellcept was Increased to 1000mg  2x/day ,(from 750mg  2x/day ).  We’ll see how the Guts handle it.  I’ll have to be sure to eat pealed Apples to get the Pectin , reducing chances of “the runs”  ( which has been near negligible ).

We discussed going back to work, I definitely need time to get in shape once the 3 months is up. Also dont want to rush back until I know things are stable.

My Last Vancouver Clinic

Oct 01 /09

A Great last Kidney Clinic in Vancouver.  Its Been 9  1/2 weeks since the transplant.  The fact that they’re transfering my file to Kelowna, were I live meens I’m doing well recovery wise.  I’m Psyched to be Home for good now.   We are officially moved out of the Kidney Condo as of today as well.

Weight  91 kg, 200.7 lb, 1st time in my life I’m over 200 lbs,  Weird !!  Looking forward to hitting the 3 month mark so I can pick up the activity / workout level a lot.

Creatinine today is  174 ( 183 the last week 3 weeks ).

Hemoglobin is 107 (up from 104)

Last Thursday we adjusted my CellCept dose delivery from 3 x 500 mg  to  2 x 750mg , so I’m taking it with the rest of my pills.   I had some stomach / diareha issues the 1st 3 days but it settled down the last couple which is Great.

Clinic, Thurs. 24th

Fast Post via Phone.
Weight 90 Kg / 198.4 Lbs up 3 lbs.
Creatinine 183 no change the last 3 weeks. No Worries !
Hemoglobin 104 up from Mid 90’s 130’s is the prefered range. Higher Hemo means more Oxygen in my Blood so MORE ENERGY.

Guts are 70 % good.

I’m feeling GREAT, NO COMPLAINTS !

Kidney Clinic, 7 1/2 weeks

I’m back  in Vancouver for a few days.  The Kidney Clinic went well.

Weight   88.6 kg / 195.4 lb   ( 1 week ago  89.3 / 196.8 lb )

Creatinine  182   same as last week,  No worries,   All other numbers are Good .

Note : My Creatinine of 182 is measured in umol/L ,  a second way of measurement is  in  mg/dL. ( gives a smaller number,   today mine would have been  2.06  mg/dL ).  To roughly convert between the 2  just  multiply or divide by 88. 182 / 88 = 2.06 mg/dL .   Or  2.06 x 88 = 181.2 umol/L .

Hemoglobin 97 up a wee bit which is good,   Potasium 4.1  OK.

They upped my Tacrolimus a from 2.5 mg   2x/day to   3.5 mg   2x/day. We’ll see what that does to my Creatinine as Tacrolimus  restricts Blood flow a bit,  could that be why Creatinine flatlined this week.

Overall I’ve been feeling Really Good the last couple days. Tons of energy,  Guts have been about 70 % good and I’ve felt like I was doing a decent amount around our house yard and family.  I’m liking it Big time.

My 15 year old Son just arrived in Vancouver tonight and just the 2 of us will be here until Sunday.  On our hitlist is the Vancouver Canucks Game on Saturday night then we drive home Sunday.    It should be a good long weekend .

7 Weeks with the 3rd Kidney

Things are progressing well.  It’s great to be down to 1 clinic / week ( Thursdays ) .  The Drugs are getting easier to take. Less G.I. issueswith minimal upset stomach or Intestines and diarrhea less than 1/2 the time, and none have been “sneak attacks” which is great. Prednisone is lower since Friday and Tacrolimus seems OK.

Body / Mobility wise, I’m able to do a decent amount of yard work and walking. Have done some easy street hockey which is great.  Rippin a Slapshot does feel “Right” ( nothin hurting but feels a little strained ) so I’m not doing that again for a couple weeks.  Some very easy running (more like Gliding) across the street or for a few seconds feels OK, but i don’t push it. I feel my Belly Jiggling which is an odd sensation for Me.

  I’m home again for 6 days ( until Wed. ) which is great as I am able to contribute a lot around the house and do some computer work for the biz.  It’s nice to feel useful. 

I still have some occasional soreness 1 – 2 inches below the incision in the hip area that the Doc figures is just scar tissue.  It only shows up if I’ve been sitting for a while.  Changing positions frequently prevents it.

All in all, things are very good !!   Now to continue sculpting the rest of my life .  But thats a different story.

Thursday Clinic, 6 1/2 weeks since Transplant.

Another Good Clinic,

Weight 89.3 kg / 196.8 lb   ( 1 week ago  87.2kg / 192.2 and I actually dropped a bit the last couple days according to my daily weigh ins) .  The weight is bugging me a bit, but I’m just going to pic up the walking and biking.  I’ll watch the eating a bit, but I’m not worry about it much as the Doc said after 3 months I can get back to running, weights etc.  That will be the tough part, Pacing Myself Then !! 

Creatinine 182  ( last week 197 )  (Tacrolimus is at 2 mg 2x/day)

All other numbers are good.

They dropped my Prednisone today to 15 mg,  1x/day( from 20mg )  hopefully this will ease the side effects a bit, shaky, mind rev’s, achne on my forehead which the nurse commented on.  They called me mid afternoon and increases the TAC drug to 2.5 mg , 2x/day ( from 2.0 mg, 2x/day ).

I got refill of most of my drugs Except the Sleeping Pill,  Ran-Zopiclone 7.5mg before bed, the Doc said it was to addictive and I should ween myself off it now, down to 1/2 pill ( 3.5 mg ish ) before bed for the next few nights.  We’ll give it a try, hopefully with decreased Prednisone I’ll sleep OK.  I never did notice a wave of tiredness etc. after taking the sleeping pill, but I did sleep more soundly from past tries going without. We’ll see how it Goes.

My Next Clinic is in 1 Week.  Nice.   I ended up getting a flight deal and flew home mid afternoon.   My Wife will be in Vancouver for business Sunday – Wed coming up and I’ll stay home with our “Little Guy” a 6′2″ grade 10′er.  I’ll swap places with her Wednesday.  We also have a good warm weekend coming so it’ll be easy to be home !!

I’ll do an update early next week as nothing major is changing.

BTW, there’s been over 2000 hits on this crazy Blog since June.  You People are hard up for entertainment    ,  I’m actualy getting hits from search engines and a couple other Kidney Resource pages, that’s so cool.  Thanks for stopping by !!

The Long Weekend @ Home Report

We arrived Home ( Coll and I drove ) Thursday, with a detour through Langley for a quick visit with friends and their baby.   Michele and the boy’s where at the house and had welcome home balloons and Dinner ready, how nice.  Ate outside on the patio, GREAT TO BE HOME !!

Friday, I had a good sleep in my own bed, slept in until 9am as it was Quiet and darker than the condo, what a treat.    I fixed the lawnmower which had quit working ( poor design ) and cut the front lawn ( slowly ) , quite a little workout.  The boys did the back yard. I Siesta’d a bit then we went out on the boat for 2.5 hrs. I drove and relaxed, they kneeboared and swam.  Just relaxed the rest of the evening.  Had a headache at the base of my Neck Thursday and Friday evenings, but I think its posture related.

Saturday.The Weather kinda crapped out.  I went to the Store and did some wall fixing and hung a mirror. Did a bit of crazy Vine trimming in the yard then  Siesta’d.  I took Dane and a friend to District 9, the movie, it was GREAT !.  Sitting still gets uncomfortable where my pants or gotch cross my incision and at the fold/joint of my torso/hip.  I have to adjust positions / clothing a lot.

Sunday,We all took it easy today, mostly chilled and putzed around the house.

Monday,  The Transplant was 6 weeks ago !!   Weather sketchy so no H2o,  back to the store for 2 more change room mirror replacements with wall repairs 1st.  Also a couple other jobs. This definitely tired me out.  We returned a freezer that died at our house and I took Dane for back to school shopping. No Siesta today.  I was ready for bed early.

I find that I still cant do much bending and twisting or changing levels, like squatting down.   This  gets to my midsection and I start to feel the Incision deep inside. So I take breaks when doing this.

My stomach and bowels have been 50 / 50, sometimes good, other times, not so much.  I wonder when this will end ?

I think the Prednisone is catching up with me. I’ve gained a Pound a day for the last week and hadn’t changed my eating that much,  Getting a double chin which is a 1st for me and puffy cheeks. I’m still drinking and peeing good so I think the Kidney is functioning OK.  I am also getting mood swings more and got very quickly irritated and was shaking regarding a guy who was being a real prick who owns a business next to my wifes.  Way to strong a reaction.   I read up on Prednisone more,  It’s a real BITCH of a drug ! A Love / Hate relationship.